Tuesday 28 March 2017

Shocking stuff from 'Inspirational Parent Speakers and Authors'

The photo shows a shocked older woman.  

I'm shocked.  These days, it takes quite a lot to shock me, because I've seen and heard a lot in 20 years as an autism professional.  But today, I read the 'inspirational pages' of a mother whose child is autistic.  The mother in question has devoted a whole page to her Inspirational Achievements, helping parents whose children are autistic.  She has set up a conference about autism, at which there is not one autistic professional.  Not one.  I repeat that because it's worth repeating.

But even that didn't really shock me.  Apparently it's fine to run conferences where every bit of information from professionals is second-hand.

The thing that stopped me in my tracks was her claiming that having an autistic child may cause cancer.  The stress of it all, you see, she says.

Hold it right there.   There is no known direct link between stress and cancer.  We have endless research into this.  So we can safely establish that this is nonsense.

And, children, Mrs Inspirational Autism Mother, will grow up believing that they are responsible for the death of their carers from cancer.  

Do not say things that will damage a child and cause them even more reason to display the 'distress behaviour' you claim to wish to stop.  We have too many autistic young people trying to kill themselves.  Too many parents truly believing that their child cannot hear, and cannot read.  Shocked also that this individual is now a key speaker for the NHS.  
Really, NHS?

Tuesday 21 March 2017

Sesame Street and Autism

The famous US television show for children, Sesame Street, has introduced an autistic character. The picture above shows "Julia", the young autistic girl, looking at a butterfly. There was some controversy when Julia first appeared in 2015 in some Sesame Street materials.  The autistic communities and organisations in the US have had some input since then.  We shall hope that things go well, in the storylines.

I am delighted to see autistic characters in shows.  I have two concerns about some aspects of this character.   We learn that it's a non-autistic person who does the voice for her and explains what she is feeling.   Why not one of the millions of autistic people, many of whom are excellent trained actors?   

We read that this is about, "people with autism" and "a child with autism".  That's 'people-first language'.  The idea that unless you put the word 'people' in front of the statement, no-one will know that we're people.  Most odd.  So, I'm a person with whiteness, and person with femaleness.  I'm also a person with right handedness, a person with Christianness, and a person with gayness?    Is that the logic of person first language?   Then why don't we say those things too?   

We don't say, "person with femaleness" because we are not ashamed of being female. And we know females are people.  I think we do.  It goes without saying, yes?

In autistic communities and groups, most don't say, "person with autism", because we should not be ashamed of being autistic.  And we know autistic people are people.  Same principle.

I respect that some autistic people want to be called 'person with autism'.  If that is their personal choice, great.  I'm fine with personal choice.  Most do not want to be called that. There's research.  Truly, most don't.  

I respect that for some, their lives are made hell  - with endless socialising forced on them, inappropriate sensory environments, etc.  For some,  autism can seem like a burden.  I'd like a world that respected our needs and was prepared to offer us the courtesy of adaptation.   For those who have long hours as a carer, with little support, I'd like much better support and better training available for families, carers and teams.   Working as hard as I can to help achieve those things.  I have an autistic son.  I know what you mean.  I'm not for one minute saying that there are no challenges, or that everything is easy when you're different.  But all the tragedy-talk?  It's been a disaster.  Truly.  It's done the opposite of what was hoped for.

So, when a show uses 'person first language', it's making a choice.  A choice that says that the majority of autistic people don't get to decide on the language.  What does that say to autistic people?  I'm not sure.  I know it feels uncomfortable.

In the online media today, we see why positive autistic characters are so important. Comment after comment from some of the public, calling autism a disease (it's not - it's a natural variation of brain design).  Others saying we're all a tragedy.  Mmm, no, most autistic people are fabulous. Every single person is loved and of value as a fellow human being.   Others saying that we are an epidemic that needs wiping out.  No, we've always been here, in about the same numbers - we are just better at diagnosing it now.   And others saying it's a mental illness, which it isn't.  So, endless myths still out there.  Much to be done.  For those autistic people, their families and friends who are reading some of the comments, I'm so sorry.  Truly, I want a world where stuff like this isn't said any more.  Little wonder that the suicide rate of autistic people is so high, when we endure such commentary almost every day of our lives.  It needs to stop.  Really, it does.  It helps no-one at all.  We are all worth respect and love.  If you woke up each day to a barrage of, "You're a disease/danger/monster/burden/low functioning cost to society", how would you feel?  

I want to thank the creators of the autistic character on Sesame Street.  I hope that, together, everyone learns a lot about the wonderful autistic people we share our lives with.  Whether verbal or non-verbal.  Whether young or old, male or female, of any IQ and set of abilities.  We're as varied as any other population of people, but also autistic.   Honest, loyal, dedicated, passionate about learning and about our specialist topics, sensing the world differently to others, communicating differently to others - and adding so much to families, friendships, communities and workplaces.

As you're reading about Julia, or watching the show, find out more about autism from really good sources.  Get good training from groups like Autism Oxford UK, the National Autistic Society award winners for 2016.  They train across the country using autistic professionals who I am proud to work with as a senior trainer. Support charities such as the National Autistic Society, who I help advise, quietly in the background.  And get to find out more about the autistic people already in your life.  We're 1 in 30 of the people you already know, already work with, already share friendships with.  You didn't know that?  That's because so many of us are scared of those public reactions...and others don't know they are autistic, yet.

Be an ally.  And a friend.  It really helps.  
Meantime, enjoy the show.

Monday 13 March 2017

Autism: Access for All

I am passionate about access for all.  Especially to places of beauty, art, music, creativity, faith. So many autistic individuals are quite unable to access many such places.

I am fortunate to work with the Royal Collection's properties such as Windsor Castle, and with National Trust, English Heritage, Glastonbury Abbey and many others.  It's about individuals and their families having confidence that a place is accessible.

The most simple things can turn a lovely day out into a painful and exhausting process for autistic people.  There are some 2 million of us in the UK, of all ages, IQs, male, female and other gender identities.  Nearly all peaceful, kind, thoughtful individuals.

I would commend this two minute video to anyone trying to understand autism.  Autism is mostly a sensory processing difficulty. This is one young person, trying to access a very simple thing - a visit to a coffee shop. https://vimeo.com/52193530  It needs sound, turned up as loud as you can bear.  Most others can 'tune out' background noise, flickering lighting, intense smells.  Our brains cannot.  In such a place, it becomes deafening and blinding, quite literally.  Hence the escape behaviours and pain behaviours that one sometimes sees from a small number of the two million autistic people in the UK.  Many of the rest of us learn to avoid such places, at all costs.

But...if one has to avoid restaurants, cafe's, toilets...then where can one go?  Where is safe?  A visit that turns into a hungry, thirsty, desperate experience is no fun for anyone.

A good audit takes a very short amount of time.  It gives places a clear idea where the 'hazard areas' are going to be.  They can then make a judgement on how to improve this (often cheaply), or how to direct people to somewhere easier to cope with.     Armed with this information, people can make a decision on their own safety and wellbeing.  Very simple, very good news for all.   Why for all?  Because once people have made a place less of a sensory nightmare, it benefits everyone.  We saw this clearly with visitor numbers for 400 historic buildings.  Those which were 'autism friendly' saw their visitor numbers rise.

How to achieve this?  One goes to an autism access specialist, as most disability access advisers are not able to detect the hazards.  Autistic individuals can hear and see differently, and if you are not able to do that, you will miss things.  It's why it is vital to work with us, not guess.  Often, non-autistic parents or local non-autistic charity leaders are asked to tell a place what would help.  Mostly, their view is that places need lots of things for children.  Yes, it's lovely to have a play area.  But most autistic people are adults, some of us very senior businesspeople, and us playing on the swings is not an especially good idea. OK, it is fun....but....

Non-autistic parents then wonder why their children are often still screaming at the end of a visit.  Or have run away.  Or have injured themselves because they could not see a hazard.  Easy; the non-autistic parents cannot see the sensory hazards, so inadvertently dragged the child through a set of very painful and exhausting zones.  Without any idea, for that child, when the pain is going to stop.  Wouldn't you perhaps scream, fight and run?   Most autistic individuals don't.  They 'shut down' instead.  We become unable to communicate our needs, and can just stop moving.  It is because our brain shuts itself down to save further pain.   It's a terrifying experience for us, and dangerous. Either way, it's a situation that is easily avoided.

This is a fast hand drier.  Lots of places install them in the loos.  Result - many autistic people cannot access the space.  It sounds like a jet aircraft taking off, right next to us, unexpectedly.  So loud that we are forced straight into a brain event. If one knows about this, one can avoid purchasing them.   One can otherwise direct to an accessible toilet where there are paper towel alternatives.   It's easy to start to think round the challenge.
Designing a building?  Start by asking an autistic consultant to work with the project team, so that you can avoid costly errors that may lead to injury or worse for autistic individuals of all ages.  We can assess buildings at the planning stage, or at any stage of fix and fitting thereafter, ensuring that light, sound, airflow and space considerations work for all users to the benefit of all, and with minimum extra cost.  Did you know that changing the handles and bannisters can make a huge difference, for example?  Or that a simple change of colour from intense white to a softer shade with good contrast to edges can help autistic people as well as most others?  Installing a Building Management System to control heating, air conditioning, etc?  Take advice on noise levels, vibration considerations, etc.
Much of the existing design information around autism was based on the old standards from decades ago, when there were the myths that we all had learning disabilities and all lived in care homes.  Only 2% of autistic people fit that description.  The rest of us are right here, next to you.
It is good for business, it is good for PR, and most importantly, it means fewer of your visitors will be in a state of pain and exhaustion after a visit.  Fewer injuries, more profit.  More members, bringing more of their family and friends, and having a fabulous, cheerful time.
Autistic people would love access to the same beautiful things as everyone else.  Often, we are the artists, the sculptors, the musicians, the people who have the ability to donate monies.  Then, we find we are unable to access the very events that promote the work.   As the saying goes, "Industry without art is brutality".  

I'd like a less brutal world for us all.  Would you?